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Abstract

The purpose of this study was to understand TB patients' experiential accounts of access to
TB diagnosis and treatment and more specifically about their experiences of medical help
from health care professionals.
METHOD: This narrative enquiry was undertaken in three boroughs of London,
including two boroughs with the highest TB notification rates in the UK. The study involved
pilot interviews with ten patients to develop the research question. In-depth narrative
interviews with 32 additional patients were then undertaken. All participants were over
eighteen years of age. The analysis of narratives involved descriptive; holistic-form and
categorical content (themes) approaches to identify story 'plot' and 'subplots' and themes
covering the whole of the patients' journeys to treatment.
RESULTS: Seven narrative plots and thirty subplots were grouped into six
categories of medical help and specific themes embedded in them were grouped in three
stages of patients' pathways 'before' 'during' and 'after' diagnosis. These themes are listed
below sequentially to illustrate these patients' pathways. 1. Symptoms were misinterpreted
and misdiagnosed. 2. Kept on ineffective antibiotics/painkillers for many visits. 3. Referred
quickly for suspected TB or other serious illnesses. 4. Referred only when critically ill. 5.
Referred when antibiotics and pain killers not helping. 6. Referred only after pushing for
referral. 7. Sought help from A&E. 8. Diagnosed immediately after TB testing. 9. Referred
to wrong specialist and waited too long. 10. Had to fight for TB test. 11. Had lots of tests but
no results. 12. Doubts about diagnosis. 13. Felt ignored and had no information. 14. Felt
listened and cared for. 15. Quickly began my treatment. 16. Felt better after treatment, no
side-effects. 17. Felt better after treatment with side-effects. 18. Felt needed longer
treatment.
CONCLUSIONS: The accounts of two thirds of the study participants suggest that
their doctors' misunderstanding of their illness and miscommunication with them contributed
to delayed diagnosis and treatment ranging from one month to twelve months. TB service
providers and commissioners need to raise clinical staff awareness about TB and review the
factors hindering doctor-patient communication about TB care. The findings in this research
indicate that health service related delay is likely to contribute to increased TB transmission
rates in the two research settings in London.